Insurance Approval Needed

Just got back a little while ago from my oncologists appointment. She spent about an hour with us going over a list of questions we had. She has been in touch with Dr Gralow from Seattle (the one I was referred to) and guess what, Seattle recommended no more chemo....just wait for the cancer to rear its ugly head again. My Dr however doesn't agree with that and has been in touch with some other oncologists that agree we need to do something. Again, we are shooting blind....we know there is a possibility there are traveling cells out there but are they dead, alive, multiplying? We just don't know. The pill chemo idea hits the cells at only one level and I felt that we need to do combination therapy (2 drugs) and my Dr agrees so we are looking at doing IV chemo again using different drugs (and yes, I would lose my hair again too). The chemo can be done with radiation or afterward BUT it will need insurance approval. Because there are no studies that show that this works at this point we may have a fight on our hands so please pray that there would be no obstacles to this new plan. Its really hard to know if we are progressing in the right direction. I asked JR on the way home "at what point to we just stop and rely on faith?" He reminded me that God did give us Dr's and medicine and even insurance companies that may just deny the plan....so we'll see. But we ask for your prayers in the meantime. I was telling JR that having this stupid drain in has actually been a blessing because it is buying us time to fight with the insurance company before I actually get to radiation. Amazing how things work out, isn't it?

So thank you for continuing to pray for complete healing....the Dr did say that I did have a complete clinical (meaning she felt no cancer) response and radiographical (no cancer detected on PET/CT scan) so that was HUGE! However at the time of surgery there was the residual cancer and that is what we need to now fight and have a plan for. Pray too for the insurance company to understand my circumstance and grant us leniency.

Our family is going to Heyburn Park for a two day camping trip next Tuesday through Thursday so you can look forward to some camping photos on the next blog.

Blessings to you all!

Happy 15th Birthday RC

My baby is 15!! Can you believe it? On Tuesday afternoon he invited some friends from church over and we had boys coming and going til 11:30 at night! Two spent the night and then two more came on Wednesday. They had a great time playing their instruments, "jamming" as RC says, playing video games, going swimming and just hanging out. I'm sure they got a bit of sleep but not much! Wednesday was his actual birthday and we dropped all the boys off at the church for a Wild Wave- where the church provided a BBQ and then they had their youth group meeting. Please visit me on facebook for the complete album.

Before the party on Tuesday I had an appt with the surgeon and thankfully one of the two remaining drains was able to be taken out. BUT I still have one left- yuck! She talked to me about using a compression device, like a binder, to try to heal the area- the pressure would adhere the skin to the muscle and force the fluid to move elsewhere. So I am trying that. My next appt isn't til August 11th....3 more weeks! Unfortunately this is delaying radiation so that is difficult but the surgeon told me to let them worry about the timeline, not me.

While I was at the office I made another appt with the oncologist for next week to discuss the chemotherapy options. When we met with her two weeks ago it was a lot to take in. Jaylynne was nice enough to come over on Monday and talk about the office visit (she was there with us and kind enough to be another set of ears). We came up with about 10 questions for the doctor. I have been brave enough to get on some forums for breast cancer patients: breastcancer.org and tnfoundation.org (triple negative foundation) and have found some great resources in the process. There is a lot of support out there from women going through the same thing. There are also A LOT of sad stories so I have to be careful with the amount of time I spend on them. I have gleaned great information regarding what is being done at other facilities as well as some great studies that I have been able to read. So between all that research, and my discussion with Jaylynne, I am ready to ask about some alternatives to taking the oral chemo drug Xeloda. That may very well end up being the best treatment choice but I'm thankful for the opportunity to chat with the Dr again. I mentioned in my last post the possibility of going to Seattle for another opinion. In the meantime I have found out that the Dr I was referred to is the same Dr that my current oncologist has already been consulting! That was a praise! We were trying to figure out how we would take a trek to Seattle and whether that information / treatment plan would be more beneficial than what I am currently receiving BUT it has been answered already. Thanks to the Lord for his Divine intervention. So we are praying for some fruitful results from the appt next week.

JR went back to work last night after being off for 4 weeks. It was an emotional time for him as all his coworkers wanted to know how we were doing since they haven't seen him since my surgery. Those aren't always easy questions to answer. I feel great, just a bit tired but being that there are no protocols from here on out, there are no hard and fast answers. So please continue to pray for my dear honey.

Today we dropped off Lil RC and Katie at the church for camp this weekend. Lil RC is a junior counselor and this is Katie's first trip to camp. We are praying for a great time for both of them! So poor Ben is stuck with me as Jr works....Scrabble matches here we come!!

Don't you just LOVE summer?

I just love summer....wish I was in California for warmer weather and I know those in California wish they were here for cooler weather. And no, I don't envy my Aunt in Arizona with temps greater than 110!! Speaking of California, my hubby's brother and sister in law, Larry and Sandy, are visiting their son, Brannon and family. Thought you might enjoy a pix of the Wright men. Don't they look alike?

RC Sr, Larry, RC JR, Brannon

Here's a pix of Wright Sr that was taken the same day. They look great don't they?

A few days after this pix, JR's mom had surgery on her lung and a small portion was removed, diagnosis: lung cancer! What is up with all this nasty cancer- YIKES! Thankfully they were able to get clear margins at surgery and there is no follow up needed at this point. She is still in the hospital and pain is an issue but she is fairing well, just glad for it to be done. When I saw her the evening of the surgery she looked at me and said "Carole, you gave it to me"....yup, still has her sense of humor. Unfortunately she had hers first but I wasn't going to argue. So please say a prayer for them if you think of them.

As for me, I'm doing great and feeling great, just getting absolutely SICK of these stupid drains! One of them is still draining 80-100cc a day and for my nursing friends, we all know they can't be removed til they are under 30 cc a day. Other than typing I am not doing anything with my arm and I still have a ton of output. I called the surgeon's office the other day to let them know and the nurse said "well, I know some women have to keep them for up to 3 months." Did I mention I HATE that nurse? She is the same one that told me, on my postop visit to the surgeon, that the surgeon wouldn't remove any drains and she took out 2- HA! Anyway, my appt is the 21st so stay tuned.

Last Saturday we were able to go to a BBQ/swim party hosted by someone from work. I saw a lot of work friends and had a great time. THANKS MIKE! The kids had a great time swimming in a real pool (we have an above ground 4 foot deep pool). And the food was great! THANKS to Craig for all his great BBQ'ing!

The boys went to camp for a week and had a great time. Their band "Pre-Set" had their first "gig"....they got to play one song on one of the nights at camp. They think it went great but they have had mixed feedback.....I told lil RC it is constructive criticism. It does take a lot of guts to get up in front of a lot of people and for my Ben to do that was almost miraculous. He doesn't like to call people on the phone or knock on someone's door, so for him to get up in front of people- WOW! And with more practice, the rest will come in time.

While the boys were at camp, Katie had her bff over, Miss Lilly. We got some nail decorations from Wallmart and here are the results:

Aren't they cute? Such girlie girls!

And for the biggest news.....people at JR's work donated enough time for him to be off til next Thursday which will be a total of 4 weeks off! His biggest job has been telling me to SIT DOWN or STOP when I'm trying to do dishes or house work. He did clean our laminate floors one day and you would think that he was dying! Just kidding...actually, I made it hard on him because I kept standing over him telling him where he was missing spots- YIKES! We have been very thankful for all the meals which have sure helped during this time! Thanks to all our dear friends and family!!

The other night while I was visiting JR's mom on my floor at the hospital I ran into one of the intensivists I just love. She have me the name of an oncologist in Seattle--for another opinion. I so appreciated her insight because the thought of another opinion is hard...who do you trust? And why would you trust their opinion more than the great Dr you have in town? What would make me drop everything and start treatment in another part of the country? I did find out that my insurance will cover one trip to this Dr but I'm not sure if we will do it or not. My current Dr is well known and well respected and at my request has been in contact with Dr's on the west side (Seattle area), UCLA (where she was a Fellow) and also Texas (MD Anderson has an inflammatory breast cancer center). The big thing is that there is no magic pill, no easy answer. A friend from work who battled breast cancer reminded me that with whatever we decide we need to make sure that we have no regrets....years down the road we can't look back and say "I wish we would have done this or that." And I so appreciated her saying that. So please pray for us as we pursue the possibility of this avenue.

Sure hope you enjoyed some of our summer pix and updates. Feel free to give us a call, email or swing by to visit. Above all, please continue to pray that God would heal me completely so we don't need to deal with this nasty cancer business any more!

Doctors Visit/ Plan

Today we had a surgeon appt at 11:30 and then met with the oncologist at 12:30. My good friend Jaylynne met us there and helped us absorb all the information. The prior blog has a lot of the specifics about the pathology report but here's the nuts and bolts of our discussions today. First off, I am thankful that the surgeon took out one drain on each side so just one on each is left. She is happy with how I am healing and the incision looks great. I am very pleased with all the surgeon has done and her great skill. I still have full range of motion with my arms (albeit a bit of muscle soreness). She wasn't happy to hear I have loaded the dishwasher a couple of times. For another two weeks til the drains come out I have to continue with inactivity--ugh! My next appt with the surgeon is July 21st and the drains should come out then.

Now, to the oncology appt. Again, as mentioned in the prior blog, the primary tumor that was huge was totally gone. And what they told us today was that even under the microscope there was NOTHING there! That is a huge praise! There were 2 more lymph nodes they found that we didn't know about because they were small, less than 1cm and NOT detected on the PET/CT scan. There were also cancer cells still in the skin. They said that I had clear margins at surgery which again is a HUGE praise. So while I had a GOOD response to the IV chemo, it was not a complete response. So what to do now? Unfortunately there are no protocols for this situation. In fact, a May 2009 article recommended going straight to radiation with no further chemotherapy, it hasn't proved helpful. But what about those cells that we know are floating around somewhere? Are they dying? Are they multiplying? Are there some masses that are forming in other organs that are under 1cm and not picked up by PET/CT scan? Because of my age, the Dr agrees we need to do more chemo. But what? There are IV options again BUT the toxic side effects on other organs (heart failure, kidney failure, etc) outweighs the potential benefits (remember, it hasn't proven to be helpful). There are new drugs on the horizon for my type of cancer and if I take the IV chemo it may preclude me from taking those drugs if needed in the future. There is a chemo in pill form that the Dr had talked to me early on in my diagnosis about taking with radiation so we will do that. She doesn't want to postpone radiation because of the skin pathology report and IV chemo would postpone it. So radiation should still start in August and along with the first chemo will start the pills. After radiation is over I will continue the pill chemo for four months. That is the current plan. The oncologist is going to continue to do some research with other universities treatment plans (at my request) and if there are other options out there our plan might change.

We did find out that even though inflammatory breast cancer is an aggressive cancer, it is more important that I have triple negative breast cancer (estrogen negative, progesterone negative, Her2neu negative). Those that are not negative have options, an IV drug called herceptin, and daily chemo pills (that some breast cancer patients take for their lifetime like my Aunt). However, for those of us that are triple negative, there are not any drugs like that. There are however, some drugs on the horizon, and that is what I was referring to above. I need to be able to have the option of those new drugs if (when) the cancer comes back.

We also talked about the fact that they will continue to watch me like a hawk because of the likelihood of the cancer coming back within the next few years rather than 10 years down the road. I will have checkups every 3 months with scans as often as insurance will allow. But remember, the scans are not the end all because they see only to 1cm....and 2 lymph nodes were positive for cancer on my pathology report that were less than 1cm. She discussed the tumor marker test again...remember, the one that was elevated and was a false positive? We will do the test again and see if it is within normal limits and then she can watch it for trends BUT it is not as reliable as the test for ovarian cancer. So the only thing to do is PRAY and continue to depend on God!

My poor hubby felt like the Dr talked over his head most of time. With Jaylynne and myself being nurses, that was easy to do. He is trying to grasp the fact that this is something we will always deal with....there will be no normalcy. And that is hard. We were discussing the fact that it would have been within God's power to totally take away all the cancer but He didn't. We have had several months of total dependence on Him, more than we have ever depended before. It's so easy to be self sufficient isn't it? With our current situation there is no room for self sufficiency. Our dependence will continue to be a moment by moment, day by day dependence. For me, it is for my very life.

So please continue to pray for God's healing power to continue to touch our lives. And we will continue to press on......

Surgery and Beyond

Wow! It was a week ago today that I had surgery- bilateral mastectomy and lymph node dissection. JR and I had to be at the hospital by 6am and it was horrible to have to get up that early! Thankfully I got to sleep most of the day but my poor hubby had bags under bags under bags under his eyes! Jaylynne met us at the hospital and prior to registration a slew of friends from my unit came to visit and wish me well- THANKS GUYS!! The nurse took me into room 6 and began all the pre-op stuff. The nurse who was going to do anesthesia walked in and I knew by her name tag it was the gal that my surgeon recommended. I made a comment about her being highly recommended and she said she didn't know she had been requested and was moaning about not working with Dr Moline and I said "but she is my surgeon." So she looked at me, then at my name and then realized I was in the wrong room..I should have been in room 1 as I was first case! I asked if she could stay with me and she made a few phone calls and was able to remain with me which was a huge sigh of relief (my work friends know my woes with anesthesia people) and she was excited too because she got to work with my surgeon all day which suited her just fine! When the surgeon walked in and I told her what happened she said "God must be watching out for you!" to which I replied "YES HE IS!" To some it would seem that by chance the nurse put me in the wrong room which allowed me to get exactly who I wanted for anesthesia BUT we know it was divine intervention! JR and Jaylynne were able to see me before I was wheeled off to surgery and we were able to pray together. The surgery went well and 3 1/2 hours later I was done. I was admitted to the 9th floor of my hospital til I was ready to be discharged and wouldn't you know it I got sick after surgery. I was so mad that I made it all through chemo without vomiting but I had to after surgery! Once that was done I felt much better and we had more people visit and give well wishes including one of our Pastor's from church and a lot more friends from work--thanks again guys!! We were able to leave for home by 7:30pm. Jaylynne was nice enough to follow us home and make sure that JR was comfortable helping me with my drains (I have 2 on each side). I was feeling so well that she went home and JR and I konked out in exhaustion! A big thank you to my friend Brenda who took Kate for most of the day and to my inlaws who helped the kids with meals for the day while we were in the hospital.

The surgery was not what I thought. I work with open heart surgery patients and granted, in that surgery, they crack the chest open, but I thought I would have horrible chest pain after surgery and I didn't. In fact, I had minimal pain and more shoulder blade pain from the position it was in during surgery for the lymph node removal. Tylenol and a muscle relaxer helped better than narcotic pain medication so I was happy for that. Also, I have been able to have full range of motion with my arms including lifting them over my head (which is a prerequisite to having radiation). I am so thankful for the skill of my surgeon to allow all of that to take place! I do have a lot of numbness across my chest and into the left arm pit and back of the left arm and that will take some time to resolve. The drains are a pain, I mean, where do you put them? I put them in my pockets but they are still visible. Oh well, its just for a short time, up to 21 days. Not doing anything however is very hard for me. The more I do, the more drainage I have and the longer the drains will remain in place. My kids have stepped up to the plate but it is so hard not to help! Thankfully JR is off for 2 weeks so that is a big help too.

We received a call from the surgeon on Monday with the pathology report. It is mixed news. The right breast that we elected to remove had NO cancer cells--PRAISE! The big primary tumor in the left breast was totally killed --PRAISE! 15 lymph nodes were taken and 6 were positive (we knew of 4 pre-op)--PRAISE! The report did find that there are cancer cells in the channels of skin and lymph and those "travelers" (traveling cells) were MOSTLY killed. This wasn't all unexpected because we knew I would have to have radiation to kill those leftover cells. However, the travelers in the lymph channels means the possibility of them going elsewhere in the body. My pre-op PET/CT scan showed no cancer but my surgeon told me it only sees to 1mm. So cells may very well be elsewhere but they haven't formed a mass or tumor as of yet. So that means that I may need more chemo to get rid of those cells. It is a praise that the pathologist even saw all of this....sometimes they don't take enough cross sections but God saw fit for them to examine everything and I am thankful for that! We praise God that I responded to the IV chemotherapy (my type of cancer doesn't respond to pills). So if it worked so well I may just need more to really wallop those cells and get rid of them. I have a surgeons post-op appt on Tuesday the 7th and following that we will meet with the oncologist and find out a plan...but we are preparing for more chemo followed by radiation.

I was so thankful that my dear friend from work, Michelle, was here when I got the call with the report. And a few hours later Jaylynne arrived with her kids. We had great support surrounding the call and knowledgeable discussion as to what might be the next step (since Jaylynne was a manager of a cancer floor). I will say that my poor hubby took the news very hard. He was praying that it would be gone and we could move on. That night after everybody was gone we had a long talk and I told him how I feel that we have no choice but to continue to depend on God for everything....there's no slacking in that department. We also talked about the fact that NOW is the time for more chemo (if that is what is next) rather than 3 months or 6 months or a year down the road when my hair has grown back and I am back to work and we are resuming our lives. Lets get rid of it NOW. And he agreed. The whole surgery has been more difficult for him and now the news also more difficult. From the beginning of diagnosis I have wanted the cancer gone...surgically removed...so I was glad to have the surgery. BUT, Jr, being a guy, and my hubby, had a harder time. All of it is temporary as I will have reconstruction at a later point but in the meantime to see the pain on his face is hard. He continues to be loving and supportive and my rock but I see his pain so please continue to pray for him.

We have continued to have an outpouring of love from everyone. I have had almost one card a day for the last 2 weeks with positive thoughts and prayers and support. The few days before my surgery we were inundated with calls and visits and gifts. I got a gift box from Maurya, a friend at work, with lots of things but the best was a bell with a tag that said "oh nurse!" The morning before surgery one of my managers, Sue, drove all the way out to our house after a long shift to give me a beautiful At Home America wall hanging with the verse "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, to give you a future and a hope." That was hung the same day in a prominent place in our great room so we can look at it multiple times a day and cling to that promise. My niece, Roxanne, visited with her best friend Brenda and we had a great time just laughing and visiting! The Leavitts from church brought freezer meals. And the night before surgery our Pastor and his family brought over dinner and visited and we had a great time of fellowship....What better way to spend the night before surgery? I have felt so spoiled by all of you and overwhelmed by your kindness and generosity! After surgery our neighbor brought a huge pasta dish and we could only eat a quarter of it! My friend Chasity brought a yummy casserole dish the next night. And yesterday we got a call from our Pastor's mom who lives in a neighboring town. She doesn't even know us but brought us a lasagna and apple pie! What kindness! And that same day Darcy from church brought us another meal. Needless to say our freezer is full and our hearts are brimming with thankfulness!